Identifying Relevant Concepts for the Development of a Communicative Participation Item Bank for Children and Adolescents: A Systematic Review of Existing Instruments.

PURPOSE: This study aims to systematically identify items that measure communicative participation from measurement instruments that measure (aspects of) communication and/or participation in children and adolescents (5-18 years old) with communication disorders, for developing an item bank. METHOD: A systematic literature search was performed in MEDLINE and Embase to search for patient-reported outcome measures (PROMs) or parent reports measuring aspects of communication and/or participation in children and adolescents. The individual items of the included measurement instruments were reviewed on whether they measure communicative participation. The items were then classified into one of the International Classification of Functioning, Disability and Health (ICF) for Children and Youth (World Health Organization, 2007) domains of activities and participation. RESULTS: A total of 29 instruments were found, nine PROMs and 20 parent reports. One hundred forty-five items were identified that measure communicative participation. From these 145 items, 74 were retrieved from PROMs (51%), and 71 were retrieved from parent reports (49%). The majority of items were classified in ICF Domain 7, interpersonal interactions and relationships (73.8%), followed by Domain 8, major life areas (13.8%), and Domain 9, community, social, and civic life (8.3%). Only a few items were found in Domains 5 and 6, and none was found in Domains 1, 2, and 4. CONCLUSIONS: We identified 145 items potentially useful for developing an item bank addressing communicative participation in children and adolescents with communication disorders. However, item development in collaboration with the target population is needed to ensure that these items fully reflect the construct.

Further development in measuring communicative participation: identifying items to extend the applicability of the communicative participation item bank.

BACKGROUND: The ability to communicate is a prerequisite for participation in today's society. To measure participation in adults with communication disorders, the Communicative Participation Item Bank (CPIB) was developed in 2006. Since then, several new PROMs have been developed to measure communication and the impact of communication disorders on participation. Moreover, the CPIB items do not all appear to be relevant to certain populations with communication problems and context of communicative participation is changing rapidly, given the increased use of digital communication forms. The purpose of this study was to identify new PROMs developed since 2006 that aim to measure (aspects of) communication, in order to select items that are suitable for expanding the Communicative Participation Item Bank to make the item bank more widely applicable (e.g., to the hearing-impaired population) and tailored to the current societal context. METHODS: Medline and Embase were used to search for PROMs that aim to measure (aspects of) communication. Each new PROM as well as the CPIB, was evaluated to determine to what extent it contains items that measure communicative participation and to what extent these items capture all communicative participation domains by linking each item to the ICF Activities and Participation domains. RESULTS: This study identified 31 new PROMs, containing 391 items that were labelled as measuring communicative participation. The majority of the 391 items measure aspects of ICF Activities and Participation domain 'communication', followed by the domain 'interpersonal interactions and relationships'. The other ICF Activity and Participation domains were less often addressed. Analysis of the CPIB showed that items do not cover all domains of participation as defined in the ICF, such as the 'major life areas' domain. CONCLUSIONS: We found a potential pool of 391 items measuring communicative participation that could be considered for extending the CPIB. We found items in domains that are already present in the CPIB, but also items that relate to new domains, such as an item on talking with customers or clients for the 'major life areas' domain. Inclusion of new items in other domains would benefit the comprehensiveness of the item bank.

Everyday Barriers in Communicative Participation According to People With Communication Problems.

PURPOSE: The purpose of this study was to gain a comprehensive understanding of participation situations that are challenging for people with communication problems, to provide input for the further development of potential items for the Communicative Participation Item Bank (CPIB). METHOD: A purposive sampling strategy was used to include a diverse group of people with communication problems. Diaries were used as a sensitizing exercise for inductive in-depth interviews. In these interviews, elements of communicative participation situations (concepts) were elicited that participants themselves experienced as difficult because of their communication problem. A thematic content analysis was used to identify overarching themes. In addition, new items were formulated based on the raw codes of the transcripts and linked to the International Classification of Functioning, Disability and Health Activity and Participation domains to examine the distribution of items across the breadth of the construct of communicative participation. RESULTS: Eighteen interviews yielded 44 different concepts. They were clustered in six themes, which capture the person, location, topic, mode, moment, and pace of communication. In total, 103 new items measuring communicative participation were formulated. Most of these items relate to International Classification of Functioning, Disability and Health Activity and Participation domains "interpersonal interactions and relationships," "major life areas," and "community, social, and civic life." CONCLUSIONS: This study resulted in an overview of self-reported barriers in daily communicative participation experienced by people with communication problems. These communicative participation situations can be captured within 44 concepts, which are covered by six themes. Future work should investigate if the newly written items can be added to the CPIB. The concepts and the themes can be used in designing and delivering a participation-focused intervention for this population.

Development and Diagnostic Accuracy of a Shortened Dutch Naming Test for People with Aphasia Using Item Response Theory.

OBJECTIVE: The first objective was to assess the psychometric properties of the 92-item Dutch Naming Test (DNT-92), developed to assess word finding difficulties in people with aphasia, using Item Response Theory (IRT). The second objective was to select suitable items for a short version with a discriminative purpose. METHOD: This study has a retrospective, psychometric research design, in which 510 DNT-92-forms of people with aphasia and 192 DNT-forms of healthy participants were used for analyses. An IRT analysis was performed and information on the item- and person parameters was obtained. Item selection for the short version was based on a combination of the discriminative ability of the items and their estimated theta or difficulty. Items with the highest information load, and a difficulty parameter in the range of overlap between the sample of people with aphasia and healthy participants were selected. RESULTS: A 2-PL IRT analysis showed best fit to the data. Assumptions of unidimensionality, local independence, and monotonicity were met. Items were removed incrementally, whilst checking sensitivity and specificity of the remaining short form. A selection of six items proved optimal in terms of sensitivity and specificity, with an area under the curve value of 0.85. Differences were found between participants younger than 70 and older. CONCLUSIONS: The IRT assumptions for the DNT-92 were met, indicating that the test has good psychometric properties. A reduction of items to just six items proved possible, leading to a reliable six item short form with a discriminatory purpose.

How do healthcare professionals experience communication with people with aphasia and what content should communication partner training entail?

PURPOSE: Aphasia after stroke has been shown to lead to communication difficulties between healthcare professionals (HCP) and people with aphasia. Clinical guidelines emphasize the importance of teaching HCP to use supportive conversative techniques through communication partner training (CPT). The aim of this study is to explore and describe the experiences of HCP in communicating with people with aphasia and their needs and wishes for the content in CPT. MATERIALS AND METHODS: The data were collected through qualitative semi-structured interviews with 17 HCP. HCP were recruited from two geriatric rehabilitation centres in the Netherlands and one academic hospital in Belgium. The interviews drew upon the qualitative research methodologies ethnography and phenomenology and were thematically analysed using the six steps of Braun & Clarke. RESULTS: Three themes were derived from the interviews. HCP experienced that communication difficulties impede healthcare activities (theme 1) and reported the need to improve communication through organizational changes (theme 2), changing the roles of SLTs (theme 3) and increasing knowledge and skills of HCP (theme 4). CONCLUSIONS: According to HCP, communication difficulties challenge the provision of healthcare activities and lead to negative feelings in HCP. HCP suggest that communication can be improved by providing more time in the healthcare pathway of people with aphasia, adapting healthcare information to the needs of people with aphasia, commitment of physicians and managers, changing the roles of SLTs and improving knowledge and skills of HCP.Implications for rehabilitationCommunication between healthcare professionals (HCP) and people with aphasia can be improved by training HCP to use supportive conversation techniques and tools.An important condition for successful implementation of communication partner trainings in healthcare centres is to identify the experiences of HCP with communication with people with aphasia and their needs and wishes for training content.This study shows that communication problems between HCP and people with aphasia impede diagnosis and therapy with considerable implications for healthcare quality.The suggestions that HCP have concerning the content of communication partner trainings can be placed under "education" and "implementation and post-training support." HCP describe specific roles for speech-and language therapists to fulfil after the training and suggest two main changes that should be made at an organizational level.

Evaluating communication partner training in healthcare centres: Understanding the mechanisms of behaviour change.

BACKGROUND: Communication between people with aphasia and their healthcare professionals (HCPs) can be greatly improved when HCPs are trained in using supportive conversation techniques and tools. Communication partner training (CPT) is an umbrella term that covers a range of interventions that train the conversation partners of people with aphasia. Several CPT interventions for HCPs have been developed and used to support HCPs to interact successfully with people with aphasia. AIMS: The objective of this study was to identify the mechanisms of change as a result of a Dutch CPT intervention, named CommuniCare, in order to evaluate and optimise the intervention. METHODS & PROCEDURES: A total of 254 HCPs from five different healthcare centres received CommuniCare. An explorative qualitative research design was chosen. Two interviews were conducted with 24 HCPs directly after and 4 months after receiving the training that was part of CommuniCare. Two conceptual frameworks were used to deductively code the interviews. HCPs' perspectives were coded into a four-part sequence following CIMO logic: the self-reported use of supportive conversation techniques or tools pre-intervention (Context), the intervention elements (Intervention) that evoked certain mechanisms (Mechanisms), resulting in the self-reported use of supportive conversation techniques and tools post-intervention (Outcomes). The Capabilities Opportunities Motivation-Behaviour (COM-B) model was used to fill in the Mechanisms component. OUTCOMES & RESULTS: Three themes were identified to describe the mechanisms of change that led to an increase in the use of supportive conversation techniques and tools. According to HCPs, (i) information, videos, e-learning modules, role-play, feedback during training and coaching on the job increased their psychological capabilities; (ii) information and role-play increased their automatic motivations; and (iii) information, videos and role-play increased their reflective motivations. Remaining findings show HCPs' perspectives on various barriers to use supportive conversation techniques and tools. CONCLUSIONS & IMPLICATIONS: HCPs in this study identified elements in our CPT intervention that positively influenced their behaviour change. Of these, role-play and coaching on the job were particularly important. HCPs suggested this last element should be better implemented. Therefore, healthcare settings wishing to enhance HCPs' communication skills should first consider enhancing HCPs' opportunities for experiential learning. Second, healthcare settings should determine which HCPs are suitable to have a role as implementation support practitioners, to support their colleagues in the use of supportive conversation techniques and tools. WHAT THIS PAPER ADDS: What is already known on this subject? Several communication partner training (CPT) interventions for healthcare professionals (HCPs) have been developed and used to support HCPs to interact successfully with people with aphasia. To date, there is limited evidence of the mechanisms of change that explain exactly what changes in HCPs' behaviour after CPT and why these changes take place. What this paper adds to existing knowledge Evaluating our CPT intervention by identifying mechanisms of change from the perspectives of HCPs provided us with: (i) a better understanding of the elements that should be included in CPT interventions in different contexts; and (ii) an understanding of the important remaining barriers identified by HCPs to use supportive conversation techniques, even after CPT is implemented. What are the potential or actual clinical implications of this work? This study shows the different intervention elements in our CPT intervention that improve HCPs' capabilities, motivations or opportunities to use supportive conversation techniques and tools. Essential ingredients of CPT according to HCPs in this study were role-play and coaching on the job by an expert and were linked to an increase in HCPs' motivations or beliefs about self-competency. Healthcare settings wishing to enhance HCPs' communication skills should therefore consider appointing implementation support practitioners to coach and support HCPs, and facilitate these practitioners to fulfil this role.

Speech language therapists' experiences with subjective well-being in people with aphasia.

BACKGROUND: Subjective well-being (SWB) and quality of life (QOL) are intricately related constructs. Recent research shows both constructs share some facets, but are distinct entities. It is unclear, both internationally and in the Netherlands, if and how SLTs address SWB in clinical practice. The current study was set up to explore Dutch SLTs' perceptions of SWB in relation to the management of people with aphasia. AIMS: To describe how Dutch SLTs, working with people with aphasia in a private practice or a healthcare setting, address patient's SWB during diagnosis and treatment, and to identify barriers and facilitators they experience when addressing SWB. METHODS & PROCEDURES: A qualitative research design with a phenomenological approach was used. SLTs from private practices and healthcare settings were invited to participate in individual interviews and a focus group. The data were analysed thematically using a combination of inductive and deductive methods. OUTCOMES & RESULTS: Eight SLTs participated in the study. The SLTs' experiences were captured in four themes that emerged from the data: (1) SWB is a multifaceted concept and depends on patient-specific factors: premorbid factors, life priorities and time post-stroke; (2) SLTs experience more responsibility for patients' SWB than their profession allows; (3) collaboration between SLTs and patients, patients' network and other healthcare professionals is required to address SWB during diagnosis and treatment; and (4) misinterpretations are inevitable when SLTs or the patients' network address patients' SWB. CONCLUSIONS & IMPLICATIONS: The results showed that SLTs feel responsible for addressing SWB in the management of people with aphasia. Their perception of the concept of SWB is similar to the definition used in the literature and is multifaceted. They feel responsible for the part of SWB that is related to communicative functioning, but less so for the more heuristic aspects of SWB. This is related to their experienced limitation of influence on SWB, which for some leaves them feeling out of depth and uncertain about boundaries between professionals. Addressing SWB in a multidisciplinary team is therefore considered important in order to adequately and fully capture someone's SWB and reduce to clinicians' experienced burden and responsibility. What this paper adds What is already known on this subject Recent studies suggest that quality of life measures may lack facets related to subjective well-being (SWB). Aphasia is likely to impact on SWB of a stroke survivor, but it is unclear if and how SWB is addressed by speech and language therapists in diagnosis, and treatment of Dutch PWA. What this study adds This study provides insight into the operationalization of SWB in Dutch clinical practice, including barriers SLTs experience when addressing SWB. Clinical implications of this study Monitoring and influencing SWB of people with aphasia is a complex process, that SLTs consider only possible in multi-disciplinary teams. Clear guidelines on roles and responsibilities between various disciplines involved are necessary to improve care for people with aphasia.

Psychometric properties of the Dutch SAQOL-39NL in a generic stroke population.

BACKGROUND: The psychometric properties of the Dutch version of the Stroke and Aphasia Quality Of Life-scale (SAQOL-39NL) have previously been assessed for people with aphasia after stroke, but not yet for stroke survivors without aphasia. OBJECTIVE: The objective is to evaluate the psychometric properties of the SAQOL-39NL in a stroke sample with and without aphasia. METHODS: The SAQOL-39NL was administered to survivors of stroke (N = 141) who received rehabilitation in specialized rehabilitation facilities, 3 and 6 months after the start of rehabilitation. Acceptability was explored by assessing floor and ceiling effects and missing items. For internal consistency, Cronbach's alpha and item-total correlations were computed. For internal validity, intercorrelations between domains, and between domains and total score, were assessed. Convergent validity was evaluated by correlation with EuroQoL-5D scores. Responsiveness to change was investigated using d' and SRM-scores. RESULTS: Mean age was 60.4 years (SD = 11.1), 62.4% were male. Mean total SAQOL-39NLg score was 3.94 (SD = 0.68, scale 1-5). No floor or ceiling effects and 2.4% missing data were found. Internal consistency was excellent (Cronbach's alpha = 0.96). Intercorrelations between domains and total scale were moderate to excellent (r = 0.57-0.88). Intercorrelations between domains were low to moderate (r = 0.22-0.63). The correlation with the EQ-5D was moderate (r = 0.57). Only small changes in SAQOL-39NLg scores were found between 3 and 6 months. CONCLUSIONS: These data provide further evidence for the acceptability, internal consistency, and initial promising data on validity of the SAQOL-39NLg. Further research on structural validity and responsiveness to change is needed.

Brief report: eye movements during visual search tasks indicate enhanced stimulus discriminability in subjects with PDD.

Subjects with PDD excel on certain visuo-spatial tasks, amongst which visual search tasks, and this has been attributed to enhanced perceptual discrimination. However, an alternative explanation is that subjects with PDD show a different, more effective search strategy. The present study aimed to test both hypotheses, by measuring eye movements during visual search tasks in high functioning adult men with PDD and a control group. Subjects with PDD were significantly faster than controls in these tasks, replicating earlier findings in children. Eye movement data showed that subjects with PDD made fewer eye movements than controls. No evidence was found for a different search strategy between the groups. The data indicate an enhanced ability to discriminate between stimulus elements in PDD.

Intonation abilities of children with Williams syndrome: a preliminary investigation.

PURPOSE: The authors investigated expressive and receptive intonation abilities in children with Williams syndrome (WS) and the relation of these abilities to other linguistic abilities. METHOD: Fourteen children with WS, 14 typically developing children matched to the WS group for receptive language (LA), and 15 typically developing children matched to the WS group for chronological age (CA) were compared on a range of receptive and expressive intonation tasks from the Profiling Elements of Prosodic Systems-Child version (PEPS-C) battery. RESULTS: The WS group performed similarly to the LA group on all intonation tasks apart from the long-item imitation task, on which the WS group scored significantly lower than the LA group. When compared with the CA group, the WS group was significantly poorer on all aspects of intonation. Whereas there were a number of significant correlations between the intonation and language measures in the control groups, in the WS group, there was only 1 significant correlation between a PEPS-C task and one of the language measures. CONCLUSION: As a result of this study, the authors concluded that children with WS have expressive and receptive intonation abilities as expected for their level of language comprehension and that intonation and other linguistic abilities in WS are not strongly related.

Affective prosody in children with Williams syndrome.

The aim of the current study was to investigate expressive affect in children with Williams syndrome (WS) in comparison to typically developing children in an experimental task and in spontaneous speech. Fourteen children with WS, 14 typically developing children matched to the WS group for receptive language (LA) and 15 typically developing children matched to the WS groups for chronological age (CA) were recruited. Affect was investigated using an experimental Output Affect task from the Profiling Elements of Prosodic Systems-Child version (PEPS-C) battery, and by measuring pitch range and vowel durations from a spontaneous speech task. The children were also rated for level of emotional involvement by phonetically naïve listeners. The WS group performed similarly to the LA and CA groups on the Output Affect task. With regard to vowel durations, the WS group was no different from the LA group; however both the WS and the LA groups were found to use significantly longer vowels than the CA group. The WS group differed significantly from both control groups on their range of pitch range and was perceived as being significantly more emotionally involved than the two control groups.